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Hello. My name is Teresa. I am 38 years young, I am married, I am a part-time nurse, and I am a mother of 3 kids age 7, 8, and 15. I have SM w/o Chiari. I had a MRI 5 years ago for persistant migraines and they discovered that I had a syrinx as well as "white spots" on my brain and some degenerative disc disease, disc bulge, and syrinx. They sent me to a local Neurologist who did neurological assessment and an EMG to r/o MS. I did not have symptoms consistant with MS. The Neurologist told me to watch for symptoms and come back if I noticed any changes. I don't recall him ordering any meds at this time. My very first MRI was 01/24/07.

Over the next couple of years I didn't really have any exciting symptoms. Mostly just pain here and there and headaches/migraines. I was very active during the next several years with my kids and family and excercising almost daily. The SM wasn't really affecting my life that much.

In March of 2009 I had another MRI any they saw somthing on the images that they thought was Chiari. I was sent to Seattle to Dr. Richard Ellenbogen who performed an MRI with contrast. Chiari was ruled out from this MRI, but the SM was still present. The NS told me to follow up with my local NS, take muscle relaxers and Tramadol, and go to a pain specialist.

I never went to the pain specialist. I was scared that they were going to put me on narcotics and being a busy Mom and nurse, this wasn't the path I wanted to take. I also have a long hx of substance/alcohol abuse on my father's side, so taking pills scared me. Over the next 2 years I just remained active and continued to follow my symptoms.

In March of 2011 I went back to my local NS with complaints of increased pain in my upper back, shoulders, neck and head. I also had increased headaches/migraines. The thing that bothered be the most at this time was that it seemed as though the muscles in my upper back, shoulders and neck with contract and not release with massage, or muscle relaxers. At this time I was told to get another MRI, continue with the muscle relaxers, and go to physical therapy and massage therapy, and once again to monitor my symptoms.

Anyway, since this last MRI I have struggled with intermittent pain and this horrible tight muscle thing despite almost a year or massage, physical therapy and occasional chiropractic adjustments and occasional acupuncture. I still have pain and super tight muscles despite taking Tramadol, Flexeril, Robaxin, Rx strength Naproxen, and OTC Tylenol/Motrin. I also use a lot of heat and sometimes I use a TENS unit.

Essentially, NONE of these things work, and when they do it is very temporary. Recently I had a really bad cold/cough which turned into full blown bronchitis/bronchial asthma with a sinus infection and the beginnigs of an ear infection. I went to the doc for this twice and took several different meds and I am at the tail end of the cough as we speak. Anyway, I had some very violent coughing spells with this illness which lasted for over a month. I have ready that you are supposed to try to refrain from coughing with SM because it disrupts the flow of your CSF when you cough hard like that. Well, I believe it, because the last couple weeks and especially the past couple of days have been hell for me pain wise. I have been playing phone tag with a local pain specialist and hope to get in soon. I also have an appt to see an asthma/allery specialist to get allergy tested and try to get control of this chronic cough. (I have had chronic bronchitis 1-2 X a year for the past 15 years and it takes months to get rid of

I have also noticed some new symptoms lately that are really concerning me. The symptoms that I have been dealing with lately are: increasing pain from my mid back up into the base of my skull, numbness/tingling like a "cape" from my mid back to the bottom of my neck (I have had this off and on, but it seems worse). The pain is like a burning pain (I'm guessing this is nerve pain) sometimes it is intermittent, sometimes it is constant. Meds DO NOT help. My muscles continue to be super super tight, it's almost like they never relax at all, even with muscle relaxers. I also have had increased migraines, recently I had to take Imitrex 3 times in one week, which is not normal for me at all. I usually get headaches all the time, but migraines only once every several months. I do have auras with my migraines, I usually get either nauseated, have sensitivity to light/noise, or very blurry vision and trouble thinking right before a migraine attack. Sometimes I have ALL these symptoms before a migraine. In the past couple weeks I seem to have an increase in visual disturbances. I just got glasses this year to use while driving and to see far away, and I have noticed that even sometimes when I wear my glasses my vision is still blurry. Sometimes I even feel a little shaky, sometimes I can't think very well. Sometimes I feel like my heart is palpatating a little.

Anyway, I have a call out to Dr Ellenbogen in Seattle and I hope to get in to see him soon. I'd rather see him then my local NS since he is an expert in the field. I need some answers. I'm tired of feeling crappy all the time, I am staring to miss work over this (which we can't afford right now). It makes me grumpy, irritable, teary, mad, sad.....and mostly SCARED. I feel like something is really wrong. I feel like something has changed. The burning pain in my mid back and tingling is so bad right now that I could cry. (I took Flexeril and 2 Tramadol a couple hours ago and it didn't even touch the pain). I don't even know what to do anymore.

Thank you for letting me vent. It is very hard having such a rare disorder that nobody has heard of or knows how to treat. I just want to feel better, have answers, and a plan of care to follow. I'm sure you all can relate. I will check back and let you know if/when I can get into the NS. If it doesn't get better tonight and if I can't sleep I'm almost tempted to go to the ER at either Harborview or UW Hospital where Dr Ellenbogen practices.

Thanks for being here for me. Will check in again soon. Good night.......

Went to my local Neurologist today.........am scheduled for a MRI of my head, c-spine and t-spine on Dec 28th. The pain clinic finally called today and I'm scheduled to go there on Dec 27th. The neurologist mentioned Neurontin and Lyrical as possible treatment options for my nerve pain, but he wants to see my MRI results first. He gave me samples of Lidoderm patches to try on my middle back to help with the nerve pain in my middle back. I hope it helps. Not going to work tonight again, and trying to take it easy and trying not to make things more irritated. Feeling frustrated, irritated and alone...........

Welcome. I read your story and except for the SM, we are almost identical. I am also married, 38 years old, three kids, 17, 13 and 8. I was very active with my family until January 2008 when the headaches started. In October 2008 I was diagnosed with CM, 9mm herniation. Have tried many drugs through a pain management specialist who eventually started me on a natural regimen which worked up until this past spring. My last MRI two weeks ago showed no syrinx and I am being tested for MS this coming Monday with a new neurologist I have been seeing for a month. He put me on Cymbalta and for two weeks I thought I had hit the jackpot! Until two days ago, my vision started changing and I was sweating in my face.

All of the symptoms you describe, the headaches, the cape, the burning, got them all. I left my full time job as a customer service manager in January of this year. I could no longer function in that capacity, phones ringing, noisy office and the demands of others.

As for Bronchitis and asthma, i am well acquainted with those too, big sufferer since childhood. It can be debilitating to have a coughing fit. I usually have two illnesses per year as well and have suffered from sinus infections and ear infections since I was 4. When I was 11 I had extremely bad pneumonia and chronic back problems. They took xrays of my head and back.

They found nothing in the back, diagnosed it as growing pains. In my head they learned that my sinus cavities above the eyes never developed and I wonder now if that is because of the chiari and the crowding in the skull.

My new diagnosis is fibromyalgia but he is not confirming that until the EMG on Monday.

My kids' doctor wants me to have the older two tested for Chiari now, my 13 year old son shows some spine curve. This is more devastating than anything I have to endure myself. The possibility that any or all of my kids could have this.

You are not alone. This is a wonderful resource and some very nice people have been there for me even when they didn't realize it.

Please let us know how you do and feel free to PM me any time! Good luck.

Thank you for your reply. So nice to "meet" you. I was so excited that I had a reply from someone! Thank you for sharing your story, it makes me feel less alone. Sometimes I worry that the day will come where I will no longer be able to work as a nurse. I have been working the graveyard shift (11pm to 7:30am) at a local hospital for 16+ years. I work on the Mother/Baby unit. I have noticed over the past year as my pain has increased some, that graveyard shift has been getting really difficult for me. My Neurologist also told me when I saw him the other day that I need to get off the night shift. The problem is....I wake up feeling OK most mornings....but as the day progresses and into the evening I am feeling exhausted and sore all over (some areas more than others). That makes woking all night horrible because I'm going into my shift already feeling awful. I'm not sure what I'm going to do. Thankfully I only work 3 nights a week as it is.....but I have missed my last 3 shifts because I'm just not feeling "right". Left a message with the scheduling coordinator for Dr Ellenbogen (the CM/SM specialist) in Seattle who I saw over 2 years ago to rule out Chairi. I am crossing my fingers that they can get my in sooner, rather than later and hopefully this week. I told her on my message that I didn't feel like my local neuro doc had any clue about how to treat my SM and that I really didn't feel comfortable going back to him. Guess we will see what the week brings.

Went to my 2 boys wrestling tournament all day today. I had to take them by myself because my hubby was working (he's a deputy sheriff and works evenings and long hours). That tournament about did me in. I was so SORE and exhausted by the time we left. Makes me feel like a little old lady or something!! I tried the Lidoderm patch today that the neuro gave me on the side of my neck and top of my shoulder that were really hurting......It didn't work at all. Makes me so FRUSTRATED.

Well, besides having the holidays to look forward to.....and being off work until I can get my MRI done and find out what the heck has been going on with me lately.....I get to go to the asthma/allergy specialist on Thursday to get allergy tested. I'm so nervous about this. Then the next week I get to venture off to the Pain Specialist and get my MRI also. AND HOPEFULLY get up to Seattle to see the NS that I really want to see!!!!!

I too have wondered if I have fibromyalsia. What kind of doc diagnosed you with that and what kind of tests did they do?? I have seen the pressure point diagrams....and I have pain/tenderness in pretty much ALL of the areas on there. I mentioned it to the NP that I used to see and she just basically blew it off. Thinking I will mention it to the Neuro when I go.

Thank you so much for your message. It has made my whole night. On that note......I'm exhausted. Better get my sore/tired buns to bed. Wishing you sweet dreams and hope to hear from you again soon!

I get up into the Tacoma area every couple of years. I have a friend who lives in Bremerton. I am down in the San Diego area.A long time ago I used to be a nurse too, but I'm a lot further along in this journey even though we are about the same age. It might be an encouragment to you to find I've had SM around 25 years now, and yeah I've got a thing or two to say about how to cope well with it. Mine is not directly due to having borderline chiari (3.5mm), but to a mild spinal cord injury I had when I was about 15.

I did notice while reading what you wrote that you have not tried trigger point injections. That might be an extremely helpful way for you to get some of those stubborn muscles to relax without taking a bunch of extra meds. A lot of neurologist's offices can do that with lidocaine or marcaine. A pain management clinic can do them too. If the syrinx is damaging the pain centers of the spinal cord it can make muscles enervated by that area of the cord "spindle"...get little knots in them where they receive information from the nerve. Muscle relaxers just are not very effective on getting spindles to release and they hurt. Anesthesia shots will usually do the trick. Accupuncture can work for some people (I am into alt med but for some reason my gut instinct says to avoid accupuncture for myself personally), and massage therapy and slow stretching yoga can help prevent the spindles from coming back once you get rid of them...but eventually they will be back. The shots let me do more with fewer meds and less pain and less stress on my liver. There are also rx topical gels like Voltaren Gel and Flector Patches that can help spindle areas hurt less, but without narcotic ingredients.

Another thing you could try is an anti-inflammatory diet. I won't go into that here but there is a good book on the subject called "The Inflammation free diet plan" by Monica Reinagel. You don't actually have to get the book...the basic information on an anti-inflammatory diet is available online, and it's not realistic to stick to one strictly like a crash diet. It's just designed to help you make better food choices so you realize you may be eating a bunch of stuff that's making you feel worse than you have to. Omega Oils (in balance) can also help lower inflammation too.

If you could get the inflammation cascade to stop or the pain cycle to stop, you might feel better long term? Over the past year some of my cape pain has become central pain. It was much easier to avoid than it is to treat. I avoided the narcotics too and now that I'm to "that point" I find they don't work very well. Doc warned me that might be the case but it still surprised me. So now I'm off to pain management, and I keep telling myself it's not that bad...and then looking at the list of meds I take and where my pain level is despite that. Oh yeah...it's that bad and I'm keeping that appointment.My #1 advice to avoid being where I'm at is to never ever do any sustained heavy lifting under any circumstances. Just say no and walk away.Rozanne/phyreSM C2-T1, occipital neuralgia, migraines, asperger's

"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman

Thank you so much for the advise and information. That is very helpful. I have been to acupuncture already. I didn't think it helped much. Last time I went they put some needles in my thoracic area that was bothering me and I think they hit a nerve and it was awful. Won't be doing that again. Yes, the tight muscle thing is awful, and but I never knew what it was. I'm going to research what you told me. Thanks so much. Happy holidays,

Sorry I could not respond to you sooner. I was having a difficult time taking myself off of Cymbalta as it started to give me weird side effects. My new neurologist diagnosed me with fibro, he says my cine MRI of 12/05/11 showed no syrinx and no lesions on the brain so it cannot be MS. I am having a new EMG tomorrow, which he expects to fully diagnose it with. Fibromyalgia is such a misinterpeted disease - I myself am not fully convinced that it is not just a label that doctors slap on a patient's symptoms for lack of finding evidence of something else. I am off Cymbalta for 4 days and the electric shocks have already returned. Can't say I've missed them.

Excited for the holidays, yes, me too but although it is my favorite time of the year, I feel like I have cheated my kids out of the normal decorating and traditions that we have. I feel older than my 38 years too but I am hoping to soon change that. I gave up my full time job in January which was right around the corner from my house and paying top dollar. I just couldn't deal with the stress, insomnia, constant commotion in the office and noise.

Hoping to get some new answers tomorrow. Please let me know how your tests go.

Thank you for your post. I hope you get answers too. I'm glad I'm not the only frustrated person out there. I wish we all had answers and peace in our lives. My personality is very black and white. I want a concrete diagnosis and a plan of care and go from there. I have found over the last 5 years since my diagnosis that it isn't going to be that way. My local neuro doesn't tell me anything or do anything for me. All he does is tell me to take muscle relaxers and go to physical therapy. Well.....I have done that for almost a year and it hasn't helped me at all. I really hope that the Neurosurgeon who specializes in CM/SM in Seattle will actually DO something once I get my appointment.

I have missed 3 shifts in a row so far because of my pain and new symptoms. I don't want to go back to work until I know what's going on and if my syrinx has changed or my neck issues have gotten worse or ??? Don't really want to mess around since my spinal cord is kind of important. I HAVE to keep looking for a part-time DAY job. I have worked the graveyard shift for over 16 years and I know it's slowly killing me. I need to have a somewhat "normal" life or I'm going to lose my mind.

Anyway, thanks for letting me vent. It really does help to discuss my issues with people who are also frustrated and looking for answers. Please let me know what you find out and I will fill you in on how my week goes as well. Happy holidays and sweet dreams!

Had a frustrating night last night......had the worst headache/migraine and HORRIBLE neck pain!!! Tried heat, my heater massager, massaging my head, Imitrex, and Flexeril. After laying there crying in agony for a long time I finally fell asleep. This morning I woke up with a very stiff/sore neck. I felt ok until an hour or so ago and now the nerve pain in my mid back and up is back and I'm having a lot of numbness/tingling from my mid back up and into my face. Took some Motrin and applied a Lidoderm patch, although that didn't work very well last time. Think I will also take some Robaxin and Tramadol.....although those don't usually work either. I have to function tonight because I don't want to miss doing Santa Cop deliveries with my husband tonight. Called the NS office in Seattle, of course they can't see me until AFTER the holidays, same for my pain clinic appt and MRI appt.....ugh. Feeling so frustrated today. I just want to feel better and get answers. Will miss 4 shifts at work this week and probably 4 more before I find out what's going on inside of me. I hate the idea of burning up all my sick time because of this. I don't know what to think or how to feel anymore!!!

I have not been here lately, but I am a long time member. I do not have sm, but have experience due to my friends here at ASAP and our local support group. One thing I would suggest would be, oops, two things. One to try right away would be ice at the base of your head and top of your spine and wherever it hurts on your spine. Granted it is tempororay relief, but I know when I am in pain, releif of any kind is good. Also for nerve pain, neurontin is an oldy but goody. You may ask your NL to prescribe it for you. To tide you over untill you can see Dr E in Seattle. He is one of the best there is out there, so you are lucky to be so close as these experts are few and far between.

Welcome again. I hope you enjoyed your Christmas the best you could under the circumstances. I do understand what you are going thru. I own an insurance agency and drag myself to work every day. Today I made it here at 10:30. There are days I really think I need to sell my business and others that I think, heck, I can do this. Hang in there. At least now, you know you are not alone.

I have Syringomyelia only - no Chiari & no tethered cord. My syrinx is T6-T9, 3mm at its widest. I also have a lot of the same cervical issues you do, but no cervical syrinx. That said, I can't help much with your Chiari questions, but can offer some suggestions.

As mentioned earlier, Neurontin is good for nerve pain (the burning/tingling/numbness stuff). Lyrica is similar, but costs a lot more and tends to be associated more frequently with weight gain.

The trigger point injections mentioned earlier are not the same as accupuncture or massage (even though all three do things with "trigger points"). A doctor friend of mine gets them periodically to help with her migraines - they are normally administered by a pain management specialist.

I have a lot of trouble with my lower body, with musles locked in spasms and a lot of pain. This past fall, they injected botox into the heads of three of the muscles with which I was having a great deal of trouble. The botox didn't help with pain, but it did ease the muscle spasticity. (I was already taking the muscle relaxant Baclofen, which helped with the spasticity, but it didn't do the whole job.)

The big thing is to get yourself established with a good pain management specialist. They have lots of options for pain and the good ones, at least, take great pains not to be "pill pushers". I have had good experience with both Lidoderm & Flector patches, but they only work for certain things. I actually saw my pain specialist yesterday, and she's trying a semi-custom compound cream for the pain in one area of one leg. She also referred my to her partner, who determined that I have had some atrophy set in, and part of my pain is due to that (and also over-compensating for it), so he sent me to the Rehabilitation Hospital for some specialized physical therapy. I do take two controlled substances (vicoprofen for pain and klonopin for myclonus-like symptoms triggered by my syrinx). I have taken them regularly for years, and my pain management physician is very careful both in screening her patients before prescribing the medications and in tracking use of the medications.

Hello again. Sorry, haven't been on because of the holiday craziness. I'm waiting for my PT appointment right now. Had my MRI of brain, c-spine and t-spine yesterday. I just picked up the radiologist report. I'm even more frustrated now....because it doesn't seem too different then that last ones (not that I WANT something to be really wrong with me), I want answers to why I'm hurting so bad, having more headaches/migraines, and why I'm having the numbness/tingling in my back, and arms.